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Discussion Starter · #1 ·
good morning all,
first I'd like to say how thankful I am for this venue. It has been the one place I can go to and feel like I'm not so alone. Thanks in advance for listening. I'm not normally a whiner, but sometimes you just need to!
I was woken up at 4 this morning with severe joint pain and nausea and couldn't get back to sleep. This is nothing new for me, my symptoms began about 1.5 years ago and have just gotten worse. Like most of you, it's been very difficult trying to get the doctors (and family for that matter) to listen to me and see that although I outwardly look well, I feel horrible inside.
It all started out with fasciculations and mild joint pain, and electrical sensations running all through my body. The doc initially thought of MS, did the whole neurologist thing, CT scan, MRI (which I paid for because I didn't want to wait 8 months, still paying for it!). Nothing showed up. The neurological symptoms have never left, my muscles are constantly twitching, and during 'flares' (I haven't been diagnosed yet, waiting....), relentless nausea that can go on for a month at a time, joint pain, muscle/bone achiness, shooting pains, headaches, raynaud's, fever sometimes, and the list goes on.
I switched GPs recently because my old one just wrote me off basically. She did one ANA test and because it was negative, told me she couldn't do anymore for me. The new doc has ran another series of blood/urine tests, nothing has shown up except that I'm mildly anemic. The good thing is that he is taking me a bit more seriously and has referred me to a rheumy. He thinks I have SLE.
In the meantime, I am living with constant pain and frustration. I'm a 36 yr old single mom of two young girls, work full-time and have little support from family. I try to keep positive, but it gets hard. I feel angry with my body for betraying me. I have lived my life as healthily as possible, eat very clean and have been very physically active. I try to stay in shape, but that is even getting difficult to do cause I feel crappy a great deal of the time. AHHHH!
Anyways, I appreciate you listening to me, and thanks for the support. It definitely helps knowing that I am not alone, because it sure feels that way a lot of the time.
Have a great day :),
Sue.
 

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Hello Sue and :welcome:

I'm sorry to hear that you've been feeling so unwell and that you've had trouble being taken seriously.

It sounds like the GP change was a good thing. It is sometimes necessary (I think even for those without serious problems).

I hope the rheumy appointment goes well. If you have any questions, just fire away, we're all more than happy to help out where we can :)

Katharine
 

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Hi Sue and welcome to the site!

Lots of hugs, you have certainly been having bad time! As Katharine has said..good call changing GP's, we need one that understands as is prepared to help with continued care.

Good luck with Rhuemi appt..let us know how its goes!
 

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Hi Sue and welcome to the site, I am sorry you have been feeling so unwell. I am glad that your new gp is taking you seriously. Sounds like you have a very busy life, I hope that you find time to rest and have some 'me' time. This is very important as it helps us to recharge. I hope that the rheumy appt goes well.

Deb
 
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